Noordhoff Craniofacial Foundation helps children with craniofacial conditions
Every year, there are more than 300 children born in Taiwan with craniofacial condition. The Noordhoff Craniofacial Foundation in Taiwan aims to help people with craniofacial problems by providing training, rehabilitation, as well as scholarships. FTV reporter Stephany Yang takes us to meet some of the people they assist.
Chen-chen has a rare craniofacial condition called Goldenhar syndrome, which affects the development of his eyes, ears, and spine. Since he was 3 months old, Chen-chen has had problems with breathing and eating.
Chen-chen’s mom
After he was born, I found that he had many problems. The main issue was that he had trouble drinking milk. He couldn’t drink milk on his own, and if he took deep breaths, his face and body would turn black. This situation lasted for three to four months. Every day I wouldn’t dare sleep. The lights in the house were turned on 24 hours a day so that I could check on him and make sure he was alive.
Due to his mother’s perseverance and the assistance of the foundation, Chen-chen is nowdoing much better. Now 3 years old, his breathing has improved, and he has switched from attending special education class to regular class.
Chen chen’s mom
Now his breathing has improved. He currently relies on a respirator to sleep. The foundation checks up on us and shows such understanding. They even found us a doctor at Linkou Chang Gung Memorial Hospital, so we traveled there from Taichung for a series of examinations. Chen-chen is now 3 years and 4 months old. These past few years, the foundation has helped us get in touch with people, helped find rehabilitation classes, and assisted us in adjusting mentally to our role as caregivers for him.
There’s also Yang-yang, from Yulin. He was born with a cleft lip and a palate, and underwent two surgeries before he was even 1 year old. With the help of the foundation, Yang-yang sought speech therapy. Now 3 years old, Yang-yang has shown great progress, and he can now say a few words.
Yang-yang’s father
He would keep crying in the middle of the night and not be able to sleep. Foundation staff would come to the house to help with putting on his nose molds, and help us with his special feeding bottles and pacifiers. Since starting speech therapy, he can now pronounce the sounds for “b,"“p”and "m.” He can also now say “good,” “no” and “mom” in Mandarin.
The Noordhoff Craniofacial Foundation was founded by Dr. Samuel Noordhoff in 1989, in hopes of helping congenital craniofacial patients receive holistic care and medical treatment as well as educate the public about the condition. The Noordhoff Craniofacial Foundation provides training for family members and respite caregivers. In addition, the foundation also arranges summer camps, scholarships, and grants for affected children.
Chen I-ling
Noordhoff Craniofacial Foundation
Since the establishment of the foundation in 1989, there have been more than 15,000 children with craniofacial conditions that have registered with us. We serve about 1,500 children and adults who have been with us for many years. Our services are split into different stages, and we provide services both during pregnancy, and shortly after birth. As the child grows older, we will arrange a follow-up plan.
There are more than 300 children born with congenital craniofacial anomalies in Taiwan every year, including cleft lips and palates, microtia, and other congenital craniofacial conditions. The foundation hopes to continue to support these children and their families. They also call on more people to donate to help support the families.
2023-01-17
